“Either families knew to advocate fiercely for the things their child needed, or worse, that they didn’t know what services were available or what they needed, and they missed out,” says Melanie Rolfe, consultant for Aspex Consulting and a key member of the team developing the Paediatric Palliative Care National Action Plan.

In her recent blog for CareSearch, Melanie shares the lessons learnt and the stories that have left an imprint as she spoke with families about their paediatric palliative care journey.

She met families who had phenomenal clinician support but there were many who fell through the cracks.

Hearing and learning lived experience and consumer perspectives allowed Melanie and her team to gain a deeper understanding of the process of receiving paediatric palliative care. The current system has its strengths but there’s more work that’s needed and the National Action Plan is focused on addressing these gaps.

Melanie will go into more detail at our upcoming online Australian Paediatric Palliative Care Conference on October 13 & 14. To register click here.

To read Melanie’s blog on CareSearch, click here.